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Myasthenia GravisFor support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

Depending on a neurologist's opinion

I hesitate to use this forum as a vessel for moaning but I'm not sure who else to turn to about this.

I'm just a little over four weeks away from my first appointment with an MG specialist and the waiting is driving me nuts. The fact that the course of my future life depends on the opinion of one person whom I have never met before really troubles me. I know it is impossible to predict what the outcome of the appointment will be and there is no point in speculating, but as I have spent the last three years with next to no life and my chances of getting better depend on that appointment, it is hard to keep it out of my mind.

Before I became ill I was traveling Europe attending conferences, giving lecture recitals and performances of original dance works. I went hill walking every weekend and had an active social life. I played piano three hours a day and regularly gave concerts. I was very independent. Now I am living with my parents and am totally dependent on them. I can't travel alone or drive anymore and am having to sell my car. I can't do any of the activities that I love anymore and my life is reduced to watching TV, which I find completely mindless. I can't even manage to read at the moment as my eyes become blurry. At age thirty I assumed I would be married with children with an academic job and a nice house but this illness has taken away all these possibilities and all the things that made me feel alive.

I cannot face being told again that my symptoms are 'all in my mind' and the possibility of having to continue in this situation indefinitely with no diagnosis, help or treatment available drives me to despair. I know I just have to wait and see on the outcome, but I just want my life back!

This MG specialist may be an excellent and caring physician or a total idiot.

He is not the only neurologist in the world. If what he says doesn't make sense, seek another opinion.

Second, being ill sucks. It makes us more dependent on others, it requires that we work around it. It requires painful adjustment to a different way of life.
Some are (relatively) fortunate to have an easy to diagnose and manage illness and some are less fortunate.
some have an excellent response to treatment with complete disappearance of their symptoms and others do not.

This does not mean that you can't find the way to live with your illness, receive supportive care and treatment.

You sound like a very talented and creative person. Why waste all your time watching TV? Why not find the way to do what you want and like. Find the way to feel that your productive life was not totally taken from you.

Thanks for your thoughts. I am still trying to persist in doing the things that keep me going, I am still trying to keep up the yoga in the mornings and play a little piano in the afternoons, and the occassional bit of cooking. I try to weigh up the fact that I am probably making myself worse by keep on trying to do things with the psychological benefit of feeling I am making an effort every day. I believe if I keep trying eventually things will improve. But at the moment doing anything makes it worse. I can do nothing and be stable, or try doing something and be worse every day. Sometimes my body gives me no choice and I can't even force myself to do something. My body just gives up.
But I also know that the way I am has to be within certain limits, and those limits are partially imposed by not having a diagnosis. I will never be able to accept that my illness is 'all in my mind' and I will never give up trying to find an answer. I'm just not prepared to accept that this is how my life will be indefinitely, espcially when there is potentiall treatment that could improve my quality of life.

Thanks for your thoughts. I am still trying to persist in doing the things that keep me going, I am still trying to keep up the yoga in the mornings and play a little piano in the afternoons, and the occassional bit of cooking. I try to weigh up the fact that I am probably making myself worse by keep on trying to do things with the psychological benefit of feeling I am making an effort every day. I believe if I keep trying eventually things will improve. But at the moment doing anything makes it worse. I can do nothing and be stable, or try doing something and be worse every day. Sometimes my body gives me no choice and I can't even force myself to do something. My body just gives up.
But I also know that the way I am has to be within certain limits, and those limits are partially imposed by not having a diagnosis. I will never be able to accept that my illness is 'all in my mind' and I will never give up trying to find an answer. I'm just not prepared to accept that this is how my life will be indefinitely, espcially when there is potentiall treatment that could improve my quality of life.

That's not doing the things that keep you going, that is fighting your limitations. It's not the same thing even if it seems that it is. It took me a long time to understand that.

I don't know if there are many patients who looked for answers more than I did. But, at some point there are no more answers and you just have to live with what there is. This doesn't mean that you succumb to your illness or stop searching, it just means that you are much more patient and understanding about it. I still read every new paper published on MuSK MG (and many times share it with my neurologist if I think there may be some practical ramifications to it), but I no longer feel that my life or even productive life depends on it.

And yes, it is sometimes frustrating to think that there could have been a better understanding, better diagnostic tools and better management approach for those diseases. But, that's the way it is and we have to find the way to accept it and try to patiently/gradually/gently do what we can to change this.

Your still that amazing person with just trying to cope with a body that no longer behaves
And worse part is not having the right medical help and being insulted like many of us are because off their lack of Knowledge even with being diagnosed its still Difficult
It's so wrong you haven't had any proper help good luck

I hesitate to use this forum as a vessel for moaning but I'm not sure who else to turn to about this.

I'm just a little over four weeks away from my first appointment with an MG specialist and the waiting is driving me nuts. The fact that the course of my future life depends on the opinion of one person whom I have never met before really troubles me. I know it is impossible to predict what the outcome of the appointment will be and there is no point in speculating, but as I have spent the last three years with next to no life and my chances of getting better depend on that appointment, it is hard to keep it out of my mind.

Before I became ill I was traveling Europe attending conferences, giving lecture recitals and performances of original dance works. I went hill walking every weekend and had an active social life. I played piano three hours a day and regularly gave concerts. I was very independent. Now I am living with my parents and am totally dependent on them. I can't travel alone or drive anymore and am having to sell my car. I can't do any of the activities that I love anymore and my life is reduced to watching TV, which I find completely mindless. I can't even manage to read at the moment as my eyes become blurry. At age thirty I assumed I would be married with children with an academic job and a nice house but this illness has taken away all these possibilities and all the things that made me feel alive.

I cannot face being told again that my symptoms are 'all in my mind' and the possibility of having to continue in this situation indefinitely with no diagnosis, help or treatment available drives me to despair. I know I just have to wait and see on the outcome, but I just want my life back!

I think that all of us on this board have experienced the same feelings that you are going through now.

I have had mg for almost 6 years now. I have had a crisis at the start, due to me not accepting the fact that I was so healthy, and then told that my life was going to change to where I am today. (subject to change at any time) Currently I am very lucky, and living a very normal life.

Currently I am on a minimum dosage of prednisone and mestinon. I have tried several other treatments, which have not helped.

MG is a continual learning process, everyone is different.
Stress is the main enemy of MG. Don't get ahead of yourself, wait and see what your 1st appointment brings.

I am on my 6th neurologist, hopefully you will find success with your first neurologist. Like all diseases, you have to manage it, rather than the disease manage you.

Don't ever hesitate to post here. We truly understand. From your post you have been a truly active and gifted (music, dance, etc.) person.

Is it possible for you to change your life focus/goals (at least for now) from being an active participant in music and dance, to an observer and perhaps "critique" that which you are observing?

Agreed, the "adrenalin" and "endorphins" you probably receive(d) from performing are quite different from the ones you might get from "just" watching and hearing these activities. But I wonder if you might benefit from even the smallest amounts of adrenalin and endorphins generated. (Former tennis player here; I miss playing so much; but now I enjoy watching matches much more!)

Suggestions:

Are you able to watch pianists, concerts, etc. on TV? Dance programs? If not available on television, (we have public television stations here in the States) - perhaps renting music and dance dvds is an option. At least you would be watching something in areas that you enjoy, and this might lessen (albeit temporarily) - some of your ambiguity about that upcoming doctor appointment.

Are you able to divert your concerns by listening to your favorite types of music? (ipod, cd's, etc.)?

If you are already doing these things - what about writing down your opinions (critiquing) your personal observations?

Perhaps you could do online research - regarding your creative abiltities and interests.

There could be many options with your background.

Hang in there, wild_cat. We know you are going through a very difficult time. I believe you will find out that you are stronger than you think.

By the way, it seems to me that many (most) of us here in this group were previoulsly very active life participants. Also we seem to have something else in common; we are Survivors.

I agree, first of all the unknown is so tough i think.... My mind can't stop thinking or trying to figure out what the heck this whole thing could be.. I can never turn off my investigative side into all of this mess..
Second of all - it is hard I think especially in neurology with everything is so subjective to the examiner - one neuro would tell my I have diminished reflexes, the other would say they are brisk.. one would say I am weak, the other would say "it's all anxiety" haha.. it is SOOO frustrating!! I think I saw 4 or 5 neuros before going to the neuromuscular clinic at the university,.. and then saw 2 at my first appointment and when I was admitted might have seen 8-10 more!!! NONE of them could figure it out.. but thankfully after months and months they did admit me when I crashed and try IVIG..
I was also a very active person (and also a dancer for 15 years)!! had been a high risk pregnancy for 2 years (had babies back to back).. and was thrilled to be able to "get my life back" and get back to running and working out.. ha.. joke was on me I guess.. It is hard when I think about taking the kids hiking, skiing etc (I was also a surfer.. but would be afraid I would drown at this point).. so I have no idea if I will be able to participate with the kids in these things.. and it breaks my heart, it is so hard just not knownig, or fearing the worst.. but
I was so sick, all I could do is walk a few steps and would have to lie on the floor, couldn't hold silverware, my kids etc.. No matter how hard I tried, I coudlnt function much at all.. IVIG changed all of that.. I am still a long way from what used to be normal, and am just thankful for this new normal (After a Dr telling me it could be ALS.. I am VERY VERY thankful each day that I am better off than if that is what I had.. )..
I hope you find some answers, and they try some treatments on you.. it is rough to not know, but to also be told it could be in your head.. as if anyone wants to spend my free time at a Dr's office being poked and prodded! Ick!

wild_cat, Yes, it is beyond overwhelming that your entire future might be in the hands of a complete stranger. I hope you have a neurologist who is aware of this "power" and uses it wisely.

Your symptoms sound so very classic. Have you set yourself up for a good appt.? Have you written a simple "log" of symptoms, when they happen, etc? Sometimes it helps for a doctor to see symptoms than to hear us say them. Then they are also there as a permanent record.

I've had MG my entire life but only diagnosed at age 42 (misdiagnosed with lazy eye at age 10). I have gone through so many phases of adapting my life to this disease it's unreal. But that's the great thing about being human; we are adaptable. We might get there via kicking, screaming, crying, rocking or any other mode of coping but we get there.

It does help to really look at the phases of grief and know that they are useful, no matter what order you go through them or what ones you skip over. Hopefully you'll get to the diagnosis and treatment phases soon.

The brain is truly amazing. You might get a high from endorphins and oxytocin from exercising but you can get the same from playing music while doing dishes. And this might be borderline inappropirate to put here on this particular forum but there are people who can have an "O" while sleeping, with no activity other than brain activity.

There are some amazing leaders in the field of energy and medicine. We are each a field of energy, one that is largely untapped. If you can do some reading in that area, it really does help. For example, I try to focus every day on gratitude, love of what is around me and what I can do and that my mind is a playground I can hop around in despite MG. I meditate (which I've been taught how to do well), which really keeps me centered. I stay away from any "artificial" energy as much as I can, such as electronic things because they emanate electronic fields that can be harmful to us. If you don't know much about this stuff, it might sound like I'm getting off topic.

I do hate that I can't do what I used to and I still go through phases of anger over it. That's really normal! But then I get "real" and deal with my life the way it is and not the way I want it to be. But you're still in the diagnosis stage of all of this. Cut yourself a break. For whatever reason, you're having to go through all of this. And while it sucks, I do believe we all go through what we do for a reason.

You can't compare your life to anyone else's with any degree of success but, sometimes, it does help to look at people in NJ or NY who just lost everything or people who have ALS. But that's really just a coping skill. After you get a diagnosis, if you can see a psychiatrist or psychologist and get more coping skills, it really does help to handle an illness. Having one truly challenges you on a daily basis.

I hope you and your neurologist can work together to figure it all out. In the meantime, do something really nice for yourself. Pamper yourself. Let the expectations go and just enjoy the moment.

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